The Power of Neurodiversity

Foreword to the Paperback Edition

As the paperback edition of The Power of Neurodiversity goes to press, we are witnessing the expansion of what I’ve called in the book our “culture of disabilities.” Currently, the newest version of the psychiatrist’s bible, the Diagnostic and Statistical Manual (DSM 5) is being prepared for publication in 2013. This manual, which influences not only psychiatrists, but also mental health professionals, the legal profession, and the field of education, threatens to add new categories of disorder to its already long list of mental disorders. Among the manual’s sharpest critics is Dr. Allen Frances who chaired the Task Force that prepared the previous version, the DSM IV. Frances contends that “normality is an endangered species” with this new version, and that the DSM 5 will probably create millions of new diagnoses by including such proposed disorders as Psychosis Risk Syndrome, Minor Neurocognitive Disorder, Binge Eating Disorder, and Temper Dysfunctional Disorder with Dysphoria. Allen contends that pharmaceutical companies are likely to welcome these new illnesses into its fold. In Psychiatric Times, he writes: “There would be massive overtreatment with medications that are unnecessary, expensive, and often quite harmful.”

At the same time, however, there are positive developments in the emerging field of neurodiversity that can hopefully counter at least some of the negative influences of our disability culture. Politically, we’ve seen the appointment by President Obama of a key neurodiversity advocate, Ari Ne’eman, to the National Council on Disability, which advises the president and Congress on matters concerning disability. Ne’eman, who himself has Asperger’s syndrome, is an autism rights activist who believes that autism is a neurological difference that should be respected, not a disease to be cured.

On the technological front, there has been a vast expansion in the past two years of new applications for such devices as the iPhone and the iPad; “apps” that can assist neurodiverse individuals in creating positive niches for themselves. One mother of a thirteen-year-old with Down syndrome was interviewed in Great Schools, and observed that “as much as he struggles with reading, Aidan’s a wizard with the iPhone. He picked up his uncle’s iPhone one day, and without anyone telling him how to do it, he found and figured out every game app on it (and there were a lot). The touch screen and the apps are intuitive to him in a way that a keyboard is not.”

Finally, there is an aesthetic dimension to neurodiversity that is being explored by such artists as Ali Hossaini, a renowned artist, philosopher, and media expert, who is developing a video installation entitled “Neurodiversity: The Autism Project,” which will seek to simulate many of the sensory experiences of autism, so that neurotypical individuals can begin to understand the world in which the neurodiverse lives. In these positive developments, we can begin to make out a subtle but significant shift in how mental disabilities are viewed, and there is room for optimism that neurodiversity will continue to grow as a concept, change attitudes concerning mental illness, and ultimately improve the lives of those who are “differently wired.”

Preface

While working as an educational consultant, I used to go into schools and meet with parents, teachers, and specialists at Individual Educational Plan (IEP) meetings concerning specific “difficult” students. Before each meeting, I would ask to have a copy made of the child’s “cumulative file,” consisting of grades, reports, tests, and other official papers extending back into kindergarten. I’d take a yellow marker as I read through the file and highlight anything positive about the student including comments (e.g., a kindergarten teacher’s note: “Loves to finger paint”), high grades or test scores (e.g., high score on the Object Assembly subtest of the Wechsler Intelligence Scale for Children), and anything else that seemed promising. Then I’d type all the positive material together on two or three pages (often distilled from one hundred or more pages) and hand it out at the meeting. First, I’d notice that many adults at the meeting would express surprise at the number of positive things said about a student who was so troubled and/or troubling to others. Second, I’d start hearing comments like “Now that you mention it, he does have a flair for drawing,” or “It’s true, he really is a hands-on learner.” Typically, IEP meetings would tend to dwell on the child’s negative attributes, and a dark cloud would hover over the group. However, I discovered that when the meeting started with people talking about the students’ positive assets, this often opened things up to a broader discussion of the children’s true potentials, and often some real solutions to helping them would be generated in the course of the meeting.

This little exercise of mine points to something more significant about the true nature of people who struggle with labels like ADHD, autism, and dyslexia both inside and outside of school. Too often, the seven labels that I take up in the course of this book (“autism,” “ADHD,” “dyslexia,” “mood disorders,” “anxiety disorders,” “intellectual disabilities,” and “schizophrenia”) attract negative thoughts and attributions from professionals, family, and others, and these individuals go through their lives saddled with low expectations. However, once we start to look more deeply into their lives, we begin to see strengths, talents, abilities, and intelligences shine through. This process of investigating the positive dimensions of people with negative labels can make a world of difference in helping them achieve success in life. It’s because this work is so important that I am convinced we need to reject the “disease-based” thinking that too often dogs the lives of labeled individuals and embrace a more positive vision of who they are, and who they can become. The word “neurodiversity” conveys this sense of affirmation. Just as we use the terms “cultural diversity” and “biodiversity” to refer to the rich variety of social heritage or biological life, we need a term that conveys a sense of the richness of different kinds of brains. Coined by autism advocate Judy Singer, “neurodiversity” is just the right word at the right time to account for recent evidence from brain science, evolutionary psychology, and other fields that suggests that amid the damage and dysfunction appearing in the brains of people with mental health labels, there are bright, shining spots of promise and possibility. Rather than viewing people with dyslexia, mood disorders, ADHD, or autism as having “broken brains,” as some have done, I present strong evidence in this book for extraordinary gifts in those individuals who might to many people seem least likely to possess them. I hope that in the course of this book you begin to experience a kind of pleasant surprise at the number of positive things that can be said about people possessing each of these seven conditions. I’d also like this book to encourage dialogue about the “hidden strengths” of people in our own lives who have one or more of these seven conditions (e.g., “Now that you mention it, my uncle has autism, but is a mechanical genius”). Finally, I’d like to open up a broader discussion about the meaning of human diversity as it relates to the brain. Up until now we’ve tended to use heavily negative medicalized language to speak of brain diversity but generally positive naturalistic language to talk about cultural diversity and biodiversity. For the sake of our well-being and health as a society and culture as a whole, it’s essential that we start using more positive language to talk about the brain in its many variations. This relatively new term “neurodiversity” (in use for only the past ten years) gives us a means of doing that. To be sure, I don’t want to slide into Pollyannaism and have us simply extolling as marvelous anything that the brain conjures up. It is an under-statement to say that these seven conditions bring with them untold suffering for those who have them and for those who are caretakers and loved ones. But we’ve become one-sided in our disease-based orientation to brain differences and need to spend time exploring the positive side to correct this imbalance. If this process results in some positive solutions being generated to help individuals with these brain differences, then the time spent in writing this book will have been well worth it.

The book begins with a chapter that summarizes eight basic principles about neurodiversity, including the idea of “niche construction,” which, like a beaver building a dam, provides opportunities for neurodiverse individuals to create suitable lifestyles for themselves that seek not so much to fit into the world around them as to make the world accommodate itself to their needs, styles, and assets. The next seven chapters take each of the brain conditions listed above in turn and focus on the strengths that I’ve observed in the literature. Especially interesting to me is the way in which these conditions are regarded in other cultures, or might have proved useful in times past (including prehistoric times). This serves to highlight another of my central principles from chapter 1: whether you are regarded as disabled or gifted depends largely on when and where you were born. I am convinced that not enough attention has been given to the cultural relativity of disability labels and that there are good reasons why these conditions are still in the gene pool. In each of the seven chapters, I also examine how to construct niches using assistive technologies (e.g., spell checkers and text-to-speech software for dyslexics), good career choices (e.g., the computer field for people with autism), human resources (e.g., a life coach for people with ADHD), and specific strategies (e.g., mindfulness meditation for people with anxiety disorders). In chapter 9, I look at neurodiversity applied to children and education, noting that special education programs up until now have been isolating, stigmatizing experiences for many kids and that a new type of inclusive neurodiverse classroom, consisting of kids with and without labels, is a more suitable learning environment for all children. Finally, in chapter 10, I write about the future of neurodiversity, examining a business, for example, that hires people with Asperger’s syndrome to test computer software because they do a better job than so-called neurotypicals. I also look at the increasing threat that genetic engineering and prenatal screening pose in potentially eliminating neurodiverse people from the planet. An appendix provides a list of helpful books, videos, organizations, and assistive technologies for each of the seven brain differences covered in this book.

I’d like to thank a number of people for helping me with this project. First, my literary agent, Joelle Delbourgo, who is a dream agent, pure and simple. Also my editor, Renee Sedliar, who has been the in-house shepherd of this book at Da Capo, senior production editor Cisca Schreefel, and copy editor Annette Wenda. I’d like to thank Judy Singer and Harvey Blume for coming up with the term “neurodiversity” and Kathleen Seidel for introducing me to it through her marvelous Web site, Neurodiversity.com. I’d like to thank Oliver Sacks for his body of work on the brain, which makes him in my estimation “the godfather” of neurodiversity. I’d also like to thank my psychiatrist, Dr. R. S. S. Gardner, for helping me with my own mood disorder so that I could finish this book despite going through a particularly difficult depressive period during most of its composition. Thanks too to Sandy and Archie Deeks for keeping it real. Finally, I’d like to thank my wife, Barbara Turner, for her love, patience, and understanding while I’ve been immersed in this project.

CHAPTER 1

Neurodiversity: A Concept Whose Time Has Come

If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each human gift will find a fitting place.

—MARGARET MEAD,
Sex and Temperament in
Three Primitive Societies

Imagine for a moment that our society has been transformed into a culture of flowers. Now let’s say, for the sake of argument, that the psychiatrists are the roses. Visualize a gigantic sunflower coming into the rose psychiatrist’s office. The psychiatrist pulls out its diagnostic tools and in a matter of a half hour or so has come up with a diagnosis: “You suffer from hugism. It’s a treatable condition if caught early enough, but alas, there’s not too much we can do for you at this point in your development. We do, however, have some strategies that can help you learn to cope with your disorder.” The sunflower receives the suggestions and leaves the doctor’s consulting room with its brilliant yellow and brown head hanging low on its stem.

Next on the doctor’s schedule is a tiny bluet. The rose psychiatrist gives the bluet a few diagnostic tests and a full physical examination. Then it renders its judgment: “Sorry, bluet, but you have GD, or growing disability. We think it’s genetic. However, you needn’t worry. With appropriate treatment, you can learn to live a productive and successful life in a plot of well-drained sandy loam somewhere.” The bluet leaves the doctor’s office feeling even smaller than when it came in.

Finally, a calla lily enters the consulting room, and the psychiatrist needs only five minutes to decide what the problem is: “You have PDD, or petal deficit disorder. This can be controlled, though not cured, with a specially designed formula. In fact, my local herbicide representative has left me with some free samples if you’d like to give it a try.”

These scenarios sound silly, but they serve as a metaphor for how our culture treats neurological differences in human beings these days. Instead of celebrating the natural diversity inherent in human brains, too often we medicalize and pathologize those differences by saying, “Johnny has autism. Susie has a learning disability. Pete suffers from attention deficit hyperactivity disorder.” Imagine if we did this with cultural differences (“People from Holland suffer from altitude deprivation syndrome”) or racial differences (“Eduardo has a pigmentation disorder because his skin isn’t white”). We’d be regarded as racists. Yet with respect to the human brain, this sort of thinking goes on all the time under the aegis of “objective” science.

The lessons we have learned about biodiversity and cultural and racial diversity need to be applied to the human brain. We need a new field of neurodiversity that regards human brains as the biological entities that they are and appreciates the vast natural differences that exist from one brain to another regarding sociability, learning, attention, mood, and other important mental functions. Instead of pretending that there is hidden away in a vault somewhere a perfectly “normal” brain to which all other brains must be compared (e.g., the rose psychiatrist’s brain), we need to admit that there is no standard brain, just as there is no standard flower, or standard cultural or racial group, and that, in fact, diversity among brains is just as wonderfully enriching as biodiversity and the diversity among cultures and races.

Our Disability Culture

Over the past sixty years, we’ve witnessed a phenomenal growth in the number of new psychiatric illnesses, resulting in our disability-plagued culture. In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number had tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as “learning disabilities,” “attention deficit hyperactivity disorder,” and “Asperger’s syndrome,” conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next edition of the DSM due out in 2013, including psychosis risk syndrome, temper dysregulation disorder, and mild neurocognitive disorder.

The National Institute of Mental Health (NIMH) has reported that more than one-quarter of all adults suffer from a diagnosable mental disorder in any given year. Research published in the journal Archives of General Psychiatry indicates that approximately half of all Americans may suffer from mental illness at some point during their lives.¹ One Harvard psychiatrist, John J. Ratey, has written a book titled Shadow Syndromes: The Mild Forms of Major Mental Disorders That Sabotage Us, suggesting that there may be “subclinical” varieties of psychiatric illness that exist undetected in many people. That is, they don’t meet the criteria for a full-fledged psychiatric diagnosis but are nevertheless present as “hidden” disorders.² It seems to me that we’re moving toward a day when virtually every single individual alive may be regarded as afflicted with a neurologically based mental disorder to one degree or another.

How did we get to this place? Certainly, one reason has to do with the tremendous leap in knowledge over the past several decades regarding the human brain. Hundreds, if not thousands, of studies come out every year giving us more and more information about how the human brain works. This is revolutionizing our understanding of human mental functioning, and that’s a good thing. But it’s also responsible for our becoming a disability culture. The trouble is that medical researchers generally have a disease-based perspective regarding the brain, not one that is focused on health and well-being. Funding for brain research goes to the squeaky wheel. There are plenty of studies, for example, about what’s wrong with the left hemisphere of the brains of dyslexics. Little research, however, exists on an area in the right hemisphere that processes loose word associations and may be the source of poetic inspiration.³ We want everybody to read, but we have little use for poetry as a society. Moreover, the people who make the diagnoses of mental disorder—psychiatrists mostly—generally haven’t received training in anthropology, sociology, or ecology, and thus aren’t in a position to regard individual differences from the standpoint of a diversity model.

One more reason for the proliferation of neurologically based disorders in our culture has to do with the growth of advocacy groups for specific mental diseases. These groups make it their mission to promote awareness of their particular disorder, whether it be ADHD, dyslexia, autism, or some other condition. Now, don’t misunderstand me, these groups have done an enormous amount of good in raising people’s awareness about the needs of the mentally ill. We mustn’t forget how atrociously the mentally ill were treated before the emergence of these advocacy groups. If they were identified at all, the mentally ill were thrown into snake pits, prisons, and asylums that neglected and abused them. These groups have helped raise billions of dollars to provide essential services for the mentally ill. Yet there is some truth to the fact that each group vies for funding and public support in part by emphasizing the negative aspects of their particular disorder. People won’t contribute financially to an advocacy group if the individuals to be served are merely instances of the wide variety of human diversity. Public schools aren’t going to provide special education money for children who have no specific disorder. As a result, there is a tendency to emphasize deficits, disabilities, and dysfunctions and to de-emphasize strengths, talents, and aptitudes (although a focus on strengths does form a small part of the public relations campaign of some of these organizations).

The concept of neurodiversity provides a more balanced perspective. Instead of regarding traditionally pathologized populations as disabled or disordered, the emphasis in neurodiversity is placed on differences. As we’ll see in this book, dyslexics often have minds that visualize clearly in three dimensions. People with ADHD have a different, more diffused, attentional style. Autistic individuals relate better to objects than to people. This is not, as some people might suspect, merely a new form of political correctness (e.g., “serial killers are differently assertive”). Instead, research from brain science and evolutionary psychology, as well as from anthropology, sociology, and the humanities, demonstrates that these differences are real and deserve serious consideration.

It is very important to underscore here that I recognize that these conditions involve tremendous hardship, suffering, and pain. The importance of identifying mental illness, treating it appropriately, and developing the means of preventing it in early childhood cannot be overstated, and there are hundreds of fine books that do a great job of elucidating these tasks. However, in this book, I’m emphasizing the particular point that one important ingredient in the alleviation of this suffering is an emphasis on the positive dimensions of people who have traditionally been stigmatized as less than normal. In a sense, neurodiversity draws some of its vitality from the new movement in positive psychology spearheaded by former American Psychological Association president Martin Seligman, who suggests that psychology has spent too much time focusing on what is wrong with the human personality and now must research the positive side of humanity.⁴ This book offers the richest concentration of research and information in print on the strengths, talents, aptitudes, and abilities of individuals with neurologically based mental disorders. I hope that this effort will spark the beginning of a new movement in psychology and psychiatry to thoroughly map out the gifts of neurodiverse populations.

Neurodiversity: What It Really Means

Neurodiversity as a concept is only about ten years old. It originated as a movement among individuals labeled with autism spectrum disorders (ASDs) who wanted to be seen as different, not disabled. The first use of the word “neurodiversity” in print was in an article by journalist Harvey Blume published in the Atlantic, in September 1998. Blume wrote, “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.”⁵ The actual coining of the term has been attributed to Judy Singer—a self-described parent of an “aspie” (person with Asperger’s syndrome) who wrote a book chapter in 1999 titled “Why Can’t You Be Normal for Once in Your Life?” Singer wrote, “For me, the key significance of the ‘Autistic Spectrum’ lies in its call for and anticipation of a politics of Neurological Diversity, or what I want to call ‘Neurodiversity.’ The ‘Neurologically Different’ represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability.”⁶ Since that time, neurodiversity has continued to grow as a concept through the establishment of support groups (e.g., Developmental Adult Neuro-Diversity Association [DANDA], Web sites and blogs (e.g., www.neurodiversity.com), and publications (e.g., Susanne Antonetta’s book A Mind Apart: Travels in a Neurodiverse World).

Being a new word, the definition has not yet been set down in stone. DANDA, for example, sees itself as an organization “for people with conditions such as Dyspraxia, ADHD, and Asperger’s Syndrome.” The Web site www.neurodiversity.com, while focusing largely on issues related to autism, also includes articles on a wide variety of other conditions, including dyslexia, Down syndrome, Tourette’s syndrome, and nonverbal learning disabilities. Wikipedia currently defines “neurodiversity” as “an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.” The online Doubletongued Dictionary defines “neurodiversity” as “the whole of human mental or psychological neurological structures or behaviors, seen as not necessarily problematic, but as alternate, acceptable forms of human biology.” Some definitions seek to differentiate “neurodiversity” from “neurotypical syndrome” (e.g., normal behavior), as in this tongue-in-cheek description from the online Institute for the Neurologically Typical, which views “neurotypical syndrome as characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.”

My own definition of the word includes an exploration of what have thus far been considered mental disorders of neurological origin but that may instead represent alternative forms of natural human difference. In the book I’ve devoted a chapter for each of seven conditions: ADHD, autism, dyslexia, mood disorders, anxiety disorders, intellectual disabilities, and schizophrenia. I chose these seven disorders because they have all received a substantial amount of coverage in the scientific literature and the popular press, and because virtually everyone knows someone who has one or more of these conditions. In each chapter I build bridges between how the condition is conventionally regarded and how it might be reframed using material from science and social and cultural history. I’m especially concerned with how this new model of neurodiversity can help provide a powerful approach toward alleviating some of the pain and suffering associated with each condition. As part of this plan, I’d like to share eight principles that will provide you with a solid foundation from which to launch our new adventures in neurodiversity.

Eight Principles of Neurodiversity

Principle #1: The Human Brain Works More Like an Ecosystem than a Machine

The primary metaphor used to describe the workings of the brain for the past four hundred years has been the machine. The first person to use this kind of mechanistic language in describing human functioning was seventeenth-century French philosopher René Descartes, who wrote, “They will regard this body as a machine which, having been made by the hand of God, is incomparably better ordered than any machine that can be devised by man.”⁷